An abbreviated future with Leukodystrophy: Understanding the blessings of our special ones

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August 24, 2012

When our little guy was born, we knew that he was truly special. His tiny little fingers would wind around ours; while his smile wound around our hearts.

Like any other little one, mobility was a prize that he captured with pride. He would walk from his toy box and grab a block to tease his mom. Then he would bang on the coffee table and smile as Mom would say, “No, no, no!” He would shake his curly head as he tapped the glass top. She would toss the block back into the box and he would scurry over to grab it only to race back across the living room, meanwhile shaking his head at her. We would all laugh at his spirit.

Those moments have long gone away and been replaced with doctors’ visits, hospital stays, surgery, feeding tubes, medications, muscle spasms and the abbreviated future that his diagnosis brings. “Leukodystrophy” turned our world upside down and the only thing that has kept us putting one foot in front of the other is that fact that our friends and family have supported us through this journey.

It’s only been a year since his diagnosis and yet he has changed so much in that year. Gone is the walking, crawling, rolling over, head support, self-feeding, mouth-feeding, talking and other “ordinary” ways of a toddler. What has increased is our appreciation for each moment that is pain-free. His pain takes his focus away from life’s pleasures and centers him inward. During pain-free times, he enjoys the world and all it has to offer. His smile and laughter speak volumes to all around him. He has touched many people with his precious spirit.

Leukodystrophy is not a blessing, but we have been truly blessed by many people because of it. We all hope for pain-free days for those who suffer now and a cure for Leukodystrophy. We hope that when we are blessed with our special ones, we become better people because of them.

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